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Prostate Cancer and Its Influence on Men´s Daily Lives

Annikki Jonsson 2009

GÖTEBORGS UNIVERSITET

Department of Urology Institute of Clinical Sciences

The Sahlgrenska Academy, University of Gothenburg Gothenburg, Sweden

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Front cover: “Man in the moon” by Edward Webb ©

ISBN 978-91-628-7834-4 http://hdl.handle.net/2077/20814

©2009 Annikki Jonsson

Printed by Intellecta Infolog AB, Göteborg, Sweden

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”I blomman, i Solen Amanda jag ser.

Kring jorden, kring polen Hon strålar, hon ler.

I rosornas anda, I vårvindens pust, I druvornas must Jag känner Amanda.”

– Erik Johan Stagnelius -

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ABSTRACT

Prostate cancer has been a disease of older men but age at diagnosis is falling in Sweden.

Fatigue has been regarded as a common symptom of cancer and may compromise quality of life in prostate cancer patients. The overall purpose of this thesis was to identify and describe fatigue and its influence on men’s lives when undergoing examinations for suspected prostate cancer and diagnosed with prostate cancer. Further, the purpose was to understand if prostate cancer affects the men’s daily lives. The data were collected consecutively at the outpatient clinics of two different hospitals in Sweden. Data from qualitative interviews using the same topics, with modification in paper IV, were analysed by Gadamer´s hermeneutics.

Paper I: Eleven men undergoing routine examination for prostate cancer (transrectal ultrasound and biopsy), but diagnosed as having benign disease were interviewed during the spring of 2002.

At the time of the prostate cancer examination, the men did not feel fatigue, i.e. not because of the examination; they felt healthy.

Paper II: Sixteen men newly (within 2-4 weeks) diagnosed as having localized prostate cancer and with a prostate-specific antigen level of <10 ng/ml and untreated at the time of the interview participated between spring and autumn 2003. Most of the men did not experience fatigue due to the diagnosis but experienced every day fatigue and cancer influenced the men´s daily lives. The men felt healthy.

Paper III: Ten men newly (within 2-4 weeks) diagnosed as having advanced prostate cancer PSA of > 100 ng/ml and treated for no more than 2 weeks at the time of the interview participated between autumn 2003 and December 2005. The men did not experience fatigue due to advanced prostate cancer but they experienced normal every day fatigue. The men felt healthy with some dysfunction influencing their daily lives.

Paper IV: All 22 men who were still alive since the first interview (in studies II and III) were followed up between May 2005 and November 2007. The men were living with a sense of feeling healthy, even when having lived with prostate cancer for approximately two years; both cancer stage and age had an influence on them. All the men experienced Every Day Fatigue.

Conclusions: Personality and anxiety contributed to fatigue when undergoing examination for suspected prostate cancer. Localized prostate cancer affected the men´s emotions and contacts giving them a new perspective on life. Advanced prostate cancer affects men´s lives: they are placed in a new life situation, against their will, and in this new situation, they form a new life perspective. The follow-up study confirmed the men´s view that age influences them, they live with uncertainty but with strengthened self-esteem, finding a balance in a changed life situation.

According to the present studies the men felt healthy in spite of prostate cancer. Complementary findings were found about existential thoughts. Health professionals have a unique position to identify the different stages of the men´s adaptation to prostate cancer to guide them towards their individual needs at each stage of their adjustment.

Key words: Prostate cancer; fatigue; influence; aging man; health; existential thoughts;

Hermeneutic; qualitative research; follow-up.

ISBN: 978-91-628-7834-4 http://hdl.handle.net/2077/20814

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This thesis is based on the following original papers, referred to in the text by their roman numerals:

I Jonsson A, Aus G & Berterö C. (2006). No Fatigue Related to Prostate Cancer Examination: A Qualitative Study. Austral-Asian Journal of Cancer, 5, 163-168. ISSN-0972-2556.

II Jonsson A, Aus G & Berterö C. (2007). Men´s perception of fatigue when newly diagnosed with localized prostate cancer. Scandinavian Journal of Urology and Nephrology, 41, 20-25. ISSN- 0036-5599.

www.informaworld.com/suro .

III Jonsson A, Aus G & Berterö C. (2009). Men´s experience of their life situation when diagnosed with advanced prostate cancer. European Journal of Oncology Nursing, xx, 1-6. ISSN- In press.

http://dx.doi.org/10.1016/j.ejon.2009.02.006 .

IV Jonsson A, Aus G & Berterö C. (2009). Living with a prostate cancer diagnosis; a qualitative two year follow-up. Submitted.

The papers have been reprinted with the permission of the publishers.

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ABBREVIATIONS

AS Active Surveillance

BT BrachyTherapy

CT Computed Tomography

DRE Digital Rectal Examination

EAU The European Association of Urology

EORTEC The European Organization for Research and Treatment of Cancer

HIFU High Intensity Focused Ultrasound

MRI Magnetic Resonance Imaging

NANDA The North American Nursing Diagnosis Association NCCN The National Comprehensive Cancer Network PSA Prostate-Specific Antigen

RP Retropubic Prostatectomy

RT RadioTherapy

TNM Tumour, Node, Metastasis

TRUS TransRectal UltraSonography

UICC Union Internationale Contre le Cancer (The International Union against Cancer)

WW Watchful Waiting

QOL Quality of Life

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TABLE OF CONTENTS

ABSTRACT

LIST OF PUBLICATIONS ABBREVIATIONS

INTRODUCTION ……….1

BACKGROUND ……….. 2

Prostate cancer ……… 2

Prostate cancer’s entry in men’s normal life ………... 4

CONCEPTUAL FRAMEWORK ……… 6

Fatigue ………... 6

Health ……… 8

Existentialism ………... 10

AIMS ……… 13

Specific aims ……… 13

METHOD ………... 14

Setting and sample ………. 14

Interview ……… 18

Data collection ………... 18

Data Analysis ………... 19

Trustworthiness (Validity) ……….. 20

Ethical considerations ………. 22

FINDINGS ………. 24

Summary of the four studies included in the thesis ……….. 24

Study I; No Fatigue Related to Prostate Cancer Examination: A Qualitative Study ………. 24

Study II; Men’s perception of fatigue when newly diagnosed with localized prostate cancer ……….. 25

Study III; Men’s experience of their life situation when

diagnosed with advanced prostate cancer ………. 26

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a qualitative two year follow-up ……….. 29

COMPLEMENTARY FINDINGS ……….. 31

GENERAL DISCUSSION ………... 32

Discussion of the Findings ………. 32

Fatigue

……….. 32

Health

………... 33

Existentialism

………... 36

Methodological Considerations ………. 42

Limitations

……… 45

CONCLUSIONS ………. 46

IMPLICATIONS ... 47

FURTHER RESEARCH ………. 48

SWEDISH SUMMARY ………...49

ACKNOWLEDGEMENTS ……….. 52

REFERENCES ………... 55

PAPERS I - IV

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INTRODUCTION

INTRODUCTION

New cases of prostate cancer are diagnosed among Swedish men (about 5 million men) at a rate equivalent to one every hour, every day of the year. This corresponds to nearly 9000 new cases each year and makes prostate cancer the most common cancer among males in Sweden. This is also true for many western countries, such as in Northern Europe and in the US. On average, the incidence of prostate cancer in Sweden has increased by 2.8 per cent per annum seen over the last 20 years, although it has diminished in the last two years. In 2007, 8870 new cases were diagnosed, which accounts for 34.2 per cent of all cases of cancer in men. The mortality rate for prostate cancer has been approximately 2500 deaths per year during the last decade, 2470 deaths in 2007 (1- 2). Early prostate cancers (stage T1 and T2) are increasing whereas local advanced (T3 or T4) or metastatic (prostate- specific antigen; PSA over 100 ng/ml) tumours are decreasing (3).

Several aspects of the disease are common for all men with prostate cancer, while others are widely different, determined by for example tumour state or the patients age. Even if men with prostate cancer have similar experiences, every man has his own inimitable troubles. The life expectancy of men has extended by more than 25 years during the last few decades, men´s life expectancy is still significantly shorter than that for women in most regions of the world (4). Cancer is a common disease of the elderly men and a consequent effect of aging is the simultaneous increase of prostate cancer in the older population (1, 5-7). More knowledge is needed regarding different treatments for older men but still with long and increasing life expectancy. It has been emphasized that biological age is weightier than chronological age (8) with regard to choices of cancer treatment. Better methods than age alone for estimation of life expectancy together with better understanding of the aging males’ needs and wishes are needed if we should be able to offer tailored prostate cancer treatment to an aging population (9).

Fatigue has been regarded as a common and sometimes disabling symptom of cancer or its treatment. There is no universally accepted definition of fatigue, but there are a lot of definitions focusing on the specific setting of each piece of research. According Glaus (10) fatigue as a multidimensional experience has not only biochemical or pathophysiological but even emotional and psychological origins.

This thesis is about men with suspected prostate cancer, diagnosed prostate cancer and their experiences of fatigue, as well as how a cancer diagnosis affects their life situation.

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BACKGROUND

Prostate cancer

All cancers initiate in cells, the body’s fundamental unit of life. Cancer is an idiom used for diseases in which anomalous cells replicate uncontrolled and can occupy other tissues. Once prostate cancer spreads, it is commonly first discovered in nearby lymph nodes and the new tumour has similar anomalous cells having the same name (11).

Risk factors for developing localized prostate cancer are not well known. However there are some risk factors confirmed for example age: with increasing risk as a man gets older, as well as family history, whereas diet and race are still under debate (5-7, 11). With life expectancy increasing, the proportion of older men with prostate cancer has increased. Nearly 50% of all new prostate cancers are diagnosed in men over 70 years old. Developments in medical care have increased the possibility of many of these older men living for years with their prostate cancer (7).

In the earliest stages, the majority of prostate cancers do not cause any symptoms and when symptoms occur, the signs can be quite similar to non-malignant prostatic diseases (12, 13). Men with advanced prostate cancer may have local symptoms as poor stream, frequency and urgency as well as symptoms from metastases, such as bone pain or lymphoedema. Men with advanced prostate cancer may also often have systematic advanced cancer prostate symptoms, such as lethargy (due to anaemia, uraemia and non-specific effects), weight loss and cachexia (4).

The main diagnostic and staging examinations used for prostate cancer are digital rectal examination (DRE), elevation of prostate-specific antigen (PSA), transrectal ultrasonic sound (TRUS) and transrectal core biopsy taken at the same time as the ultrasound examination, supplementing with a bone scan, computed tomography (CT) or magnetic resonance imaging (MRI) and X-ray in specifics circumstances (6). To prepare treatment there is a need to know the stage of the prostate cancer.

The Union International Contre Cancer (UICC) 2002 Tumour, Node, Metastasis (local extent of tumour = primary tumour/ metastases to regional lymph node status/ distant metastasis TNM) system is commonly used for the staging classification of the prostate cancer (9, 11).

The Gleason scoring system is usually used to grade adenocarcinoma of prostate cancer, and it is based on the growth pattern of the tumour as seen in the histopatological preparations of the biopsy cores or operative specimens. The score is the sum of two most frequent patterns (grades 1-5) of tumour growth found. The

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BACKGROUND

sum of the two most common growth patterns (Gleason grades) is reported as the Gleason score. To be counted, a pattern (grade) must take more than 5% of the biopsy specimen. The higher the Gleason score the more aggressive the cancer is:

grade 2 is thus the least aggressive and 10 the most aggressive. In other words do this grade differentiation describe how abnormal the cancer cells appear and how quickly the tumour is likely to grow and spread (6, 12, 13)

Knowledge of prostate cancer is quickly changing, where treatment of prostate cancer depends on stage and grade of the disease together with age and health status of the patient at the time of diagnosis. The European Association of Urology (EAU) has drawn up guidelines and summarized the most recent findings and put them into clinical practice (6). Men with a life expectancy of more than 10-15 years diagnosed with localized disease may either be offered observation with later curative therapy (so-called active monitoring) or directly treatment with curative intent. Curative treatment options includes surgery (radical prostatectomy) either by open or laparoscopic/robot assisted route or some of the various forms of radiation available (external-beam radiotherapy/RT, brachytherapy/BT) or both. Also minimal invasive therapies as cryotherapy or High Intensity Focused Ultrasound (HIFU) have been offered to certain patients with localized prostate cancer (14).

Patients with a shorter life expectancy (< 10-15 years) are usually offered observation (watchful waiting WW) only with possible later hormonal therapy.

Primary hormonal therapy is seldom used in patients with early stage prostate cancer. The most common side effects of treatment with curative effect is related to urinary problems (i.e. incontinence after surgery, frequency after RT), sexual dysfunction (mainly erectile dysfunction but also ejaculatory disorders) and bowel problems (after RT).

The success of treatment in early-stage prostate cancer thus involves balancing the disease aspects against the patient quality of life aspects and depends on the physician’s ability in responding to the desires and interests of the individual (14).

Men with locally advanced prostate cancer but without known metastases may be offered therapy with a combination of radiation therapy and hormonal therapy if they have a sufficient long life expectancy (15). Elderly patients are usually offered some form of hormonal therapy and here may treatment with anti-androgen monotherapy has a role.

Men with advanced disease are offered treatments which are palliative (non- curative). As prostate cancer mostly needs the male sex hormone, testosterone, for its growth is the first line therapy some form treatment aimed at lowing the serum- testosterone. This can be done by either medical or surgical castration (12).

Castration therapy is associated with loss of libido, decreased sexual function, hot

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flushes/sweating but also long-term effects on bone mineralization, lowering of serum haemoglobin and a decreased cognitive function (16).

The follow-up after treatment with curative intent in asymptomatic men are a disease-specific description and PSA supplemented with DRE recommended at 3, 6 and 12 months after treatment, after that every 6 months until 3 years and then once a year. The follow-up after hormonal treatment should be shaped individually according to symptoms, predictive aspects and given treatment. Men ought to be evaluated at three and six months after initiating treatment including PSA, DRE and valuation of symptoms to assess treatment control and side-effects of given treatment (6).

Prostate cancer’s entry in men’s normal life

Davison et al. (17) identified and described that decision making influences on men who decide to manage their low-risk prostate cancer with active surveillance. The study shows that the urologist’s explanation of prostate cancer is the most influential aspect on men selecting active surveillance and setting up coming active treatments. Most men relied on their urologist’s recommendation and did not perceive the necessity for any extra therapy or support until the cancer needed active treatment. The chronological age of patients still has a significant role to play in treatment, rehabilitation, co-morbidity and non-compliance (18). As a result, WW has been as a logical alternative to therapy for men over 70 years with prostate cancer. Bailey et al. (7) found uncertainty, appraisal of risk and possibility confirmed by experience with WW.

Types of treatments for cancer have been pointed out having several consequences on patients. Sanda et al (19) found out that different prostate cancer treatments were associated with a distinct pattern of change in quality-of-life domains related to suboptimal urinary, sexual, bowel and hormonal function. These changes influenced satisfaction with treatment outcomes among patients and their partners.

Suboptimal urinary, bowel and/or sexual function are often a consequence of initial prostate cancer therapy but after treatment, high overall health quality of life was described. The men did not view these dysfunctions as aspects of health even if they were disturbances in life (20, 21). Men who had undergone radical retropubic prostatectomy (RP) or low-dose-rate BT had similar experiences of quality of life.

Even these men perceived high quality of life about a year after treatment (22).

The three topics men described most as influencing them after radical prostatectomy were reduced to health, family and relationship with a partner, further topics described were activity, autonomy, independency, hobby and financial security (21). Ten years after external beam RT or WW, the pattern of dysfunctions was similar even between these treatments. Treatment with RT had

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BACKGROUND

minimum effects on health-related quality of life in relation to that of WW at 10 year-follow-up (23).

Prostate cancer is faced successively, starting when the men receive their diagnosis, turning attention to trouble of the usually “quiet” male body. The path of incidents brings out the importance of treatment side effects, embodied vulnerability, and the influence of the cancer on men’s “embodied” lives. Men meet existential risk together with bodily changes, resulting in a new view on life and priorities following cancer (24).

There is probably no other disease that demonstrates the social structure of masculine identity so clearly as prostate cancer, a disease including frequent symptoms and treatment side effects, leaving men with a diminished feeling of control over their bodies. This kind of loss of agency exposes the behaviour where society’s norms about correct masculine sexual behaviour and identity are social constructions not biological truths. Arrington (25) describes that there should be the possibility of redefining sexuality and masculinity among prostate cancer survivors.

The study by Berterö (26) studying men with prostate cancer shows altered sexual patterns after treatment. This author found that the men made a choice of consequences, like between life and death, when they made treatment decisions.

She also found that age, not necessarily prostate cancer, affects sexual life. The men had a hope to improve sexual function despite years of treatment even if they had accepted their new sexual pattern. The image of manliness shows that men tried to admit and handle their change in self-image. There were not only bodily changes but even the way the men felt about themselves as men and their personality in the context of their lives were different.

Existential topics like the meaning of everyday life are aroused, when life is threatened for example by a cancer diagnosis. Weisman et al. (27) studied the existential plight in cancer among one hundred and twenty newly diagnosed cancer patients significance of the fist 100 days after the definitive diagnosis. The main signs were the predominance of life/death concerns as well as worries about health and physical symptoms. Dwyer et al. (28) found in their interview study among the inhabitants of three nursing homes that a sense of meaning is created by a sense of:

physical capability, cognitive capability, being needed, as well as belonging.

Meaning was established throughout inner dialogue, communication and relationships with others. They described even that the experience of meaning is sometimes difficult to understand. Their findings illuminated how age can have an effect on one’s outlook of life. Westman et al. (29) studied among other things cancer patients (breast and prostate cancer) existential reflections on the cancer finding that they reported a need of existential support. Existential reflections can be aroused by life threatening disease and age. Consequently prostate cancer as life threatening illness as well as age could have an effect on one’s outlook on life.

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CONCEPTUAL FRAMEWORK

The choice of approach was Gadamer’s hermeneutics. Hermeneutics is about the lived experience of individuals as a way in to the social, cultural, political or historical context. Focus is mostly on meaning and interpretation, how persons interpret their world within their given context (30-34). In order to give the reader a better understanding of the use of the concepts and the perspective guiding the qualitative studies of men diagnosed with prostate cancer presented in this thesis, a short presentation of the concepts of fatigue, health and existentialism is given below.

Fatigue

Glaus (10) describes that there is not yet an across the world accepted definition of fatigue. Aaronson et alt. (35-36) pointed out that the clear definition of fatigue was difficult to derive from the literature because many disciplines such as medicine, nursing, physiology, psychology, and ergonomics had investigated this problem with as many different perspectives being identified.

The following definition is proposed for nursing usage: fatigue is a subjective, unpleasant symptom which incorporates total body feelings ranging from tiredness to exhaustion creating an unrelenting overall condition which interferes with individuals` ability to function to their normal capacity (37). The definition of fatigue according to The North American Nursing Diagnosis Association (NANDA) is “An overwhelming sustained sense of exhaustion and decreased capacity for physical and mental work at usual level” (38). Fatigue is “a subjective state of overwhelming, sustained exhaustion and decreased capacity for physical and mental work that is not relieved by rest” according to Cella et al. (39).

Everybody experiences fatigue sometimes, which is the body’s way of indicating its need for rest and relaxation. Fatigue is a kind of a protective system, designed to sustain health and to prevent disease (10). Normal fatigue is not easy to separate from abnormal fatigue. One way is to allow the person’s own judgement and to regard fatigue to be abnormal when a fatigued person starts to perceive him-/herself as sick (40). When fatigue becomes a permanent sense of tiredness or exhaustion more than normal tiredness, it can be a signal that something is wrong. The meaning of the term is both instinctively understandable, based on one’s own experience, but also indefinable (41).

Little is known about fatigue in a healthy population. Aaronson et al. (35-36) offer a definition based on qualitative findings: “fatigue in generally healthy adults is an

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CONCEPTUAL FRAMEWORK

acute, subjective, sometimes overwhelming, but temporary state (with physical, emotional, and behavioural manifestations) caused by stress and overwork in one’s life roles, which disrupts activity and alerts the person to take restorative measures”. Fatigue in healthy individuals lasted between 15 and 30 minutes and did not usually stir up hidden emotions (10).

According to Piper (42) acute fatigue is perceived as normal or expected tiredness, identifiably connected to a specific cause. It generally occurs in healthy individuals, it has a rapid start and a short duration. A healthy individual is usually brought back to a normal level of daily living and quality of life by rest, diet, and exercise and stress management.

Primary causes of fatigue in humans according to Glaus (10) are circulatory and metabolic adaptation failure, metabolic disorders, endocrine and hormonal disturbances, disruption of central nervous functions, chronic infections and humoral disorders, immunological and auto-immune processes and finally emotional distress associated with chronic disease. He means that anxiety is perceived as a correlate of fatigue.

Fatigue, a frequent symptom in primary care, pessimistically influences job functioning, family life, and social relationships. The differential diagnosis includes lifestyle issues, physical conditions, mental disorders and treatment side effects (43). Twenty per cent of family medicine cases perceive fatigue, and about 33 per cent of adolescents inform having fatigue at least four days a week. Patients with fatigue explain that they have the inability to finish some activities due to a lack of energy, while grief and depression are associated with a patient explanation that is more global, for instance being unable to do “anything” (43).

Chronic fatigue has an unknown function, mostly influencing ill clinical populations and having several, additive or unidentified reasons. Chronic fatigue is often experienced with no relation to activity. It is perceived as abnormal, unusual or immense, has an insidious start, is constant, lasting weeks, is not predicted to finish soon, is not generally relieved by usual restorative techniques and has a major effect on the individual’s activities of daily living and quality of life (10, 42, 44).

Cancer-related fatigue is an almost worldwide disorder among cancer patients and has been identified as an essential problem by them (45). According to the National Comprehensive Cancer Network (NCCN) in the United States, the definition of cancer-related fatigue is: “A distressing persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning” (46). Stone et al. (47) in their study describe that fatigue was reported to affect 56 percent of patients (n = 1370) and have a considerable impact on

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quality of life; fatigue is a common and distressing symptom. Cancer-related fatigue is multidimensional, having many origins as does cancer itself, related to the side effects of practically each treatment, depression, and other bio- psychosocial factors. Fatigue can be suffered by patients as a very frustrating state of chronic energy reduction, leading to loss of production which may diminish self- esteem (39).

Few qualitative studies can be found focusing solely on people’s own experiences or perspectives of fatigue.

Health

The definition of health is fundamentally easy to understand but still does no universally accepted definition exist. According to a modern variant of the holistic- humanistic perspective of health, man is taken to be fundamentally a social agent, a complete human being acting in society. Health is characterised in equilibrium theory by Pörn (48), who described that general conditions must be fulfilled for an individual (as a whole) to be healthy. The combination of the ability with a set of environmental situations creates a capacity which is adequate for the realization of a goal of his indicating a harmony between his capacity and his goal, a kind of balance. This balance is crucial to the conception of health; the concept of ability is an obvious starting-point in order to form the key ingredients of this conception.

Ability is a capacity making an action achievable. Generalized adaptedness belongs to health and can be considered as a relation between the ability, the environment and the goal profile. This multifaceted relation could be termed equilibrium. When generalized adaptedness is reached and equilibrium exists, the ability may be adequate with respect to the environment and the goal profile; secondly the environment may be appropriate in relation to the ability and the goal profile.

Adequacy, appropriateness and realism are the three main aspects of generalized adaptedness (48).

A person has good health if and only if he has the ability which his generalized adaptedness requires; his health is less good, if and just if his ability is inadequate.

Health is a dimensional expression the polarization of which should be described, as a sequence of life variations between perfect or good health and ill or extremely poor health. Health is a kind of wholeness and the health of a person is thus a kind of agreement between his capacities being an acting subject within the limits of his evolutionary development (48).

It is a human fact that people must always keep the future open as involving new possibilities. Health is a condition to be involved, to be in the world, to be together with friends, of active and rewarding engagement in one’s everyday tasks. Health

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CONCEPTUAL FRAMEWORK

can pictured as a state of equilibrium. It is a condition of experienced lightness, where different forces are balanced. Health manifests itself by virtue of escaping the awareness. Persons are not all the time aware of their health; it belongs to that capacity persons have to forget themselves. The harmony which is hidden is greater than the harmony which is shown. Health is an example of such a concealed harmony (49).

Nordenfelt’s (50) idea is that the notion of illness when it comes to humans has its basis in the individual experience of a perceived problem, as Pörn (48) and Gadamer (49) consider. The equilibrium theory presents a bridge between the humanistic concepts and the scientific biological ones. Diseases affect the basis of a person’s capabilities. They are states of an anatomical, physiological, or psychological kind, such as tend to restrict people’s capabilities relative to their goals (48, 51). The person can have, on the molecular level, serious diseases which have not reduced his ability to realise vital goals. Cancer for instance is not a disease because it is in abnormal state; it is a disease because it tends to entail grave incapacity. It need not so far affect the person and he can live for a long time without noticing it. The person can be said to be perfectly healthy as long as he functioned well in his daily affairs and the disease does not have any effect. As a result, a disease, even a dangerous disease, may be present in a completely healthy person (51).

Every disturbance in health, is a sign that persons must do up what is correct, to regain the balance of equilibrium, which is constitutive of life itself. Nature tries to restore what is disturbed, and to do so that the art allows itself to disappear after the natural equilibrium of health has returned. The nature of health sustains its own balance and proportion. If health cannot be measured, a natural form of ‘measure’

because it is a form of harmony with oneself, it cannot be overridden by outer control. Healing is even about re - convalescence and care for health. The physical pain is recorded through the person feeling a disturbance in harmonious physical balance constituting health, not by measurement. Dialogues increase the relationship between doctor/health personnel and patient. The final goal is enabling patients to enjoy the role they had previously in everyday lives. Only when it is attained can one speak about a full ‘recovery´, which extends beyond the sphere of the health care personnel sphere. The re-entry into everyday life can be problematical, even if persons have got back their physical health (49).

In the hidden character of health, is the mystery of our nature as living beings. All that touches on life also touches on death; this is the double aspect of our existence.

The body is life which is alive, and the soul is what animates (49).

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Existentialism

There are some key themes that all existentialists appropriate in their own way rather describing a similarity than constituting a definition of ‘existentialist’.

Existentialism can be put in the following way. Existence comes before essence; a person’s essence (what he is) is the consequence of one’s existence (his choices) rather than the contrary, i.e. it is not a destiny. Existentialism includes a philosophy of freedom and responsibility meaning that humans can stand by and reflect on what they have been doing. In this sense, all human beings are always ‘more’ than themselves being as responsible as being free (52). Frankl (53) thinks that ´logos´, meaning, do not appear from the human’s existence but are sooner something he has to confront with and that will be realized by him. He means that humans have the freedom to make choices between accepting and rejecting an offer i.e. realize the possibility of meaning or throw away it involves.

The essence of existence according to Frankl (53) involves the human as a responsible essence who has to realize the potential meaning of his own life. This is because the true meaning of life is rather to be found in the world than in the human himself and his own psyche (soul), as this would be a closed system. So the real purpose of life cannot be self-fulfilment because the human existence is fundamentally self-transcendence, not self-fulfilment. The meaning of life is changing all the time but never stops existing, so meaning is to be found by acting, experiencing value and through suffering. The only way to find the meaning of life is to experience something, for example nature or culture, and to have someone to show love to.

Every time a human confronts with an inevitable situation, such as inoperable cancer, he has his last chance to realize the highest value, to fulfil the deepest meaning, meaning of suffering. Frankl (53) means that suffering ceases to be suffering at the moment it gets a meaning through a change of attitude. Humans are ready to suffer under the condition that their suffering has a meaning.

It is not only suffering but even the death which seems to deprive humans of the meaning of life. Only really perishable aspects of life are possibilities. This perishability is the ground for the humans´ responsibility because everything depends on humans fulfilling their inner perishable possibilities. It is important that humans cannot do anything to change fate but they can, no doubt, change themselves. Perishability and death, increase humans´ responsibility because in facing they are responsible to use fleeting possibilities to bring potentialities to life, to realize values, whether they are creative, empirical, or intended attitudes. A human being has, through his chosen attitude, the possibility to find and fulfil meaning even in hopeless situations (53).

Heidegger’s philosophy could be described as the existentialist ontology. His ontology is about his thoughts of being human in the world so it is not possible to split doing and being emphasizing that one becomes through doing. He attempts to

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CONCEPTUAL FRAMEWORK

explain what it means to be human and the specificity of being human because man and the world are one i.e. being-in-the-world independent of context. The existentialists are identifiable within different contexts within real humans’ lives.

Being-with is illustrated by a mood, by how a person finds himself in specific circumstances (54, 55).

People are basically social in nature; born into a cultural world where one’s being- with corresponds to what ‘anyone’ does, developing a ‘social´. This cultural world is called by Heidegger a tradition, received as part of a common heritage. This tradition assists the creation of humans as a people and he talks about ’destiny’ in this context, not blind fate but the objective limits and chances which appear out of collective past. In the existentialist sense, these chances can give rise to the possibility of true or untrue alternatives (54). The understanding must occur within the framework of a context with professional self-understanding. A professional understanding has dimensions of understanding oneself and of understanding others. The unpacking of that pre-understanding, a person has previous inklings, makes his existentialist view important. Concepts like Angst (existential anguish) and ecstatic temporality have a central place in his early belief. So does even the idea of mortal temporality (being-unto-death), the realization and optimistic acceptance of which allow both concretization of one’s limitation and to open humans to the meaning of being by meeting oneself with the chance of ending to be (52, 54).

Gadamer developed Heidegger’s insight that as human beings, people are already in some form of interpretation, whether it is explicit or not. By focusing on the notion of ‘pre-understanding’ and how more improved understanding comes into sight; Gadamer brought forward a tradition which opens the discussion concerning the connection between ‘reflexivity’, ‘method’ and ‘insight’ (31). Gadamer means that understanding and interpretation are basics of being-in-the-world.

Gadamer talks about spirit which can be considered as an existence. Existentialism figures out questions of life, its source and its conditions anywhere meaning, freedom, loneliness and death turn out to be essential in a concept of “spiritual health”. Spirit consists of the body and that which animates it, embodying the spirit of the particular shape of life. Humans are not equal with life which reproduces itself, each one as a human must die his own death. The ‘soul’ symbolizes an individual field amongst others and reflects the entire embodied human existence, being the living power of the body. The life is awoken to think, to question thoughts and questions away from all limits. To know anxiety and to be unable to grasp death is called the ´human birth cry´ that under no circumstances fully dies (49). The life of the body is as an endless movement between the loss of equilibrium and the search for a new stability. Minor changes in balance is nothing that humans slant until falling and next turn back equilibrium but whenever humans exit this point of balance, they enter into enduring problems. Gadamer calls this the essential model for physical existence as a human, exposing the rhythm of sleeping

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and waking, the rhythm of disease and rescue, and the transformation into nothingness, the dying progress of life itself. These create temporal constructions adjusting the whole course of our lives (49).

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AIMS

AIMS

The overall purpose of this thesis is to identify and describe fatigue and its influence on men’s lives when diagnosed with prostate cancer. Further, the purpose is to contribute to our understanding of the influence of prostate cancer and its affect on men’s daily lives; increasing knowledge in order to develop the care of men with prostate cancer.

Specific aims

I To identify and describe what fatigue means to men undergoing a prostate cancer examination and determine whether the examination causes fatigue as regards of feelings of uncertainty.

II To identify whether fatigue is found in men with newly diagnosed localized prostate cancer (predominantly early stage/very low tumour burden/asymptomatic patients) and to gain a perception of whether fatigue has an influence on these men and to try to find out what the cause of this fatigue was.

III To improve knowledge and understanding of how an advanced diagnosis of prostate cancer affects the men and their life situation and causes fatigue.

IV To provide information about if and how prostate cancer affects men’s daily lives two years after the diagnosis.

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METHOD

The choice of research approach was qualitative inductive research design because there was little known about the topic (33). The qualitative research approach includes interviews and subsequent analysis of the content in order to gain new knowledge on the subject studied.

The use of hermeneutic design is one way of deepening the understanding of multifaceted phenomena, such as that of human experience (30-32). Thus an understanding of the topic and the aims of this research necessitated the hermeneutic approach in order to be able to interpret the phenomena being studied.

Hermeneutics is about the lived experience of individuals as way in to the social, cultural, political or historical context and leads to a better understanding of the experiences occurring. Focus is mostly on meaning and interpretation, how persons interpret their world within their given context (31, 34).

Qualitative interviews offered a better way to gain understanding of how a disease impacts on humans and their life situation, or whether they experience vaguely defined symptoms or not. The interviews offered the possibility for the patients to explain their perceptions of what a symptom or disease means to them personally.

This information is hard to gain from questionnaires.

Gadamer´s philosophical hermeneutics proposes no new norm of interpretation or new methodological suggestions to restructure existing hermeneutical practice, but tries to describe what really happens in each experience of understanding. The subjective intent is an insufficient standard of interpretation, since it is non- dialectical, though understanding itself according to, is basically dialectical — new concretization of meaning starting from the interactions that are proceeding constantly between the past and the present. Each interpretation attempts to be visible to the text, in order that the meaning of the text is able to speak to ever new circumstances, eliminating and requiring the translation of what is transmitted (56).

In a hermeneutic study, the interpretation and understanding of the data is based on the researcher’s existing knowledge and experience of the topics i.e. pre- understanding ícoming together with the men’s experiences. Prejudices help to understand what and when the person understands (31, 57).

Setting and sample

The data were collected at two different hospitals in Sweden. The aim was to recruit a consecutive sample of men fulfilling our entry criteria and managed at the Outpatient Urology Clinic of a County Hospital in the Southern part of Sweden.

The number of men with presumed advanced prostate cancer (study III and study

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METHOD

IV) diagnosed in the outpatient setting was diminishing at that hospital and recruitment was thus expanded to the second hospital, a University Hospital in the South-Western part of Sweden, in order to achieve the planned sample size.

Otherwise, there was no difference in entry criteria between hospitals and the interviews were performed by the same investigator in all cases.

Purposeful sampling was used, selecting men for participation based on the particular knowledge of a phenomenon for the purpose of sharing knowledge (57).

A total of 37 men were interviewed (See Figure1). The intention in studies I, II and III was to recruit between ten and fifteen men with the specific inclusion criteria stated below. Characters of the men are described to give some information which is of interest according to men´s life situation after receiving their diagnosis from the physician, not to perform any comparative analyses or to generate explanations (57).

The primary inclusion criteria in all studies were:

(i) Men ” 80 years old because multiple diseases after that age are normal and could influence the findings.

(ii) Not having participated in any prostate cancer investigation within the previous five years

(iii) Able to communicate: ability to speak Swedish, ability to understand (not unclear or confused)

(iiii) Able to give informed consent and willingness to participate in this qualitative interview study

The specific inclusion criteria in the respective studies were:

Study I

Participants in study I were men undergoing routine examination for prostate cancer (transrectal ultrasound and biopsy) but diagnosed as having benign disease.

Seven men refrained from participation due to personal reasons. From a total of eighteen men, eleven men aged 56 to 77 years (mean 65.8 years; median 68 years) participated in the study. Nine out of these 11 interviewees were retired; ten were married and had children, while one was single and living on his own.

Study II

Participants in study II were men newly (within 2-4 weeks) diagnosed as having prostate cancer and with PSA level of <10 ng/ml and who were untreated at the time of the interview. One man refrained from participation. From a total seventeen men, sixteen men aged 48 to 78 years (mean 63.5 years; median 64 years) participated in the interviews. Eight of these 16 interviewees were retired; 14 were married and two were divorced.

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Study III

The participants in study III were men newly (within 2-4 weeks) diagnosed as having advanced prostate cancer; PSA of > 100 ng/ml and had been treated for no longer than 2 weeks at the time of the interview. Age criterion was expanded to men up to 100 years old because of difficulties in recruiting men with PSA of > 100 ng/ml. Five men refrained from participation due to personal reasons or upon medical advice. From a total fifteen men, ten men aged 54 to 88 years (mean 72.1 years; median 75.5 years) participated in the interviews. Five of the 10 participants were retired; four were married, two were divorced, three were widowers and one was unmarried.

Study IV

The participants in study IV comprised all men still alive following studies II and III. Four of the total of 26 men who took part in the interviews in studies II and III had passed away prior to study IV. All of the remaining 22 men, aged 50 to 85 (median 68 years), participated in the interviews in study IV. At the time of this second follow-up interview, 20 of the 22 men had been actively treated for cancer with different therapies, such as hormone therapy, surgery, radiation or seed implants.

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METHOD

In total 37 participants/59 interviews

Study I

Eleven men diagnosed with Benign Prostatic Hyperplasia (BPH) Suspecting a Prostate cancer

Data: Qualitative interviews Analysis: Gadamer´s Hermeneutics

Study II

Sixteen men diagnosed with newly diagnosed Localized Prostate Cancer, PSA ” 10 ng/ml

Data: Qualitative interviews Analysis: Gadamer´s Hermeneutics

Study III

Ten men diagnosed with newly diagnosed Advanced Prostate Cancer, PSA > 100 ng/ml

Data: Qualitative interviews Analysis: Gadamer´s Hermeneutics

Study IV

A two-year follow-up

Twenty-two men; sixteen men from study II and six men from study III

Data: Qualitative interviews Analysis: Gadamer´s Hermeneutics

Figure 1: Study design

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Interview

A qualitative interview is like a conversation, even if interviewers have a list of issues focusing on the research topics (31, 58) that the participants want to deal with (58). The general interview guide approach was used in studies I, II and III, consisting of four to five broad and open-ended research questions, covering the area of the study (58-59) and designed to avoid influencing the patient. The participant or the interviewer often raised topics related to the interview guide, spontaneously. Interview style was open, which is crucial, concentrating on the power of attentive listening (31, 57-58). To get the men engaged in their own belief and bring in that was central for them about the topics, the interviewer waited quietly saying things like “I see”, “Can you tell me more about…”, “In what way”

and so on (57). The general interview guide with issues added from the first interview texts was used in study IV. All participants were asked to present supplementary details to the interview if there were something they thought was important but was lacking.

Data collection

During the spring of 2002 data were collected for study I. After the men gave their informed consent to the physicians, they were contacted by the researcher by telephone within two weeks of receiving their diagnoses and interviews were scheduled at a time and place suitable for them. Patients were mailed information immediately before the interview dates describing the study, its aim, structure and voluntary nature.

Data collection for study II was performed during the spring and autumn of 2003 and for study III from the autumn of 2003 until December 2005. An enquiry about participation in studies II and III was made by the physician or mailed after informed consent was given to the physician and telephone contact was taken by the researcher.

In the follow-up interview; study IV, the data were collected between May 2005 and November 2006, the men were contacted again 18-24 months after the first interview (studies II and III).

The interviews were conducted at places convenient to and chosen by the men, such as their homes, different consultation rooms at the hospital or in primary care, and in rooms for teamwork at different neutral places.

The interviews were tape–recorded with the interviewees’ permission and transcribed verbatim. The participants were assigned codenames to preserve their confidentiality. Before the interview, there was some small talk to create a relaxed relationship between interviewer and interviewee. After the interview, time was

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METHOD

given for reflection on the interview. The interviews lasted 25 – 45 minutes, with the total time per interview varying between 50 to 120 minutes.

The following topics were focused on during the interview:

Study I 1) How would you describe fatigue? 2) What does it mean to you? 3) Have you experienced fatigue today? 4) Do you remember what you were thinking about, when you were waiting for your planned prostate examination? 5) How did it influence you?

Study II 1) Are you experiencing fatigue today? 2) Have you experienced fatigue at some time in your life? 3) How did it influence you? 4) Does cancer influence your life situation to-day?

Study III 1) Does cancer influence your life situation today? 2) Can you describe your life situation? 3) Have you experienced fatigue? 4) If so, how does it influence you?

Study IV 1) Does cancer influence your life situation today? 2) Can you describe your life situation? 3) Have you experienced fatigue? 4) If so, how does it influence you?

Data Analysis

In order to gain a deeper understanding, a hermeneutic analysis and interpretation guided by Gadamer (31) was used for this analysis, in order to explain and describe how a cancer diagnosis affects the men and their life situation. Co-operation with the research team consisted of reading the transcriptions and discussing any researcher perceptions related to the interview situations and the outcome data throughout the process of analysis. The text from the interviews has been analyzed using the principles of Gadamer´s hermeneutics (31, 57). The text from the interviews has been analyzed in four steps:

This first step can be understood as openness. The transcripts were read through several times. The first analytical task was to build a sense of the whole (31-32, 57). This step gave a general sense of the content of each interview and an insight into what was important in the context and gave an initial understanding í of affected life situation.

At this second step, an awareness of the power of tradition, understood as a personal history or effect is an important principle. The meaning of the text is the result of the fusion of the horizons of the text and its interpreter. The data interpretations are the result of a systematic approach whereby the researchers

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began to have a dialogue with the text by focusing on the participant’s present life situation in order to establish if they had changes in their life or if they felt that they experienced fatigue due to their cancer.

This third step consists of two elements: a descriptive phase that proceeds from the horizon of meaning of the text and another phase in which the text is interpreted and analyzed from the interpreter’s horizon of meaning of the text. The interpretation consisted of the descriptive phase progressing from questions, posed by the text. A meaningful dialogue regarding the men’s understanding horizons was conveyed through language. Questions were generated both by the text and by the researchers. Analysis was done on both horizons in the hermeneutic circle, giving a description of the whole text and then identifying different types of clusters as a whole (31, 57).

Understanding is carried by the fusions of horizons and refers to the integration of constructions given by the men, by our interpretation of situations explained in interviews, by our professional background and by selected literature.

The fourth step is based on interpretation that involves the fusion between the horizons of the interpreter and the text. Each phrase and sentence from the transcribed interviews was reconsidered in order to analyze and interpret the data;

aiming toward interpretation and understanding from two different horizons of meaning (31, 57). The whole analysis has proceeded with as a hermeneutic circle;

from the part to the whole and back again, man by man, sentence by sentence. The analytical process is systematic and based on an understanding of the text of the interviews in addition to the facts. The text must be understood as an answer to a real question (60). In the process of understanding a real fusion of horizons occurs and the researchers´ own meaning appears.

Trustworthiness (Validity)

This whole thesis was planed and designed prospectively. In qualitative research, the concepts credibility, transferability, dependability and confirmability, are used to illustrate different aspects of trustworthiness (34, 57, 59). Although splitting the expressions of trustworthiness, they should be seen as interrelated. Lincoln and Cuba (59) mean that trustworthiness exists when the findings of a qualitative study give a picture of reality. Fleming et al. (61) present a way of acting with the trustworthiness of a qualitative research process, which are applicable to a Gadamerian research process.

The initial topic concerning credibility starts with a choice of the focus of the study, selection of context, participants and approach to data collection. Concepts need to

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METHOD

be clearly described relating to each other with no overlap. Choosing participants with diverse experiences enlarges the chance to illuminate the research issue from different aspects (57). The interviewees were of various ages, in different prostate cancer stages and in different phases in their lives, with various perspectives fulfilling the criteria.

In this thesis, co-operating with research teams during the whole research process;

critical checks concerning the participants, reflecting researcher’s own influence over the situation and involvement; open questions and assistance questions;

follow-up on some un-clear points forward and back again between data gathering, analysis, quotations from the transcribed text and dialogue have been ways of achieving credibility. The value of dialogue among co-researchers has been highly important. Credibility distributes the research and refers to relying on how data and processes of analysis are confronted (34). Major trustworthiness is credibility and cannot be well established without access to the data sources themselves (59).

Trustworthiness includes even transferability referring to the area where the findings are transferable to other groups (34, 59). In the present thesis, to facilitate transferability, clear and individual descriptions of culture and context, selection and characteristics of participants, data collection and process of analysis is crucial.

Even the findings together with appropriate quotations enhance transferability.

Findings in qualitative studies cannot be generalised but can be applied in another context, such as for the disease characteristics of the sample (62).

Another aspect of trustworthiness is dependability/reliability. Dependability (34, 59) is about confirming the way for both instability and phenomenal or design induced changes, that is, the degree to which data change over time and alterations made in the researcher’s decisions during the analysis process. There is a risk of inconsistency in data collection, when data are broad and the collection eventually expands. It is important to ask the same topics for every participant yet interviewing is a developing process when interviewers attain new insights subsequently influencing follow-up questions or narrowing the focus. In this thesis, dependability was gained by use of the interview guide, tape-recorder, describing data collection and methods for analyses; describing participants and context described and coding and reading by the research team. The consistent and accurate audit in the thesis examined the process results in dependability so the inquiry audit involved an analysis of data in the form of recorded materials, data reduction, data reconstruction as findings, relationships and interpretations, and process notes by the research team.

Lincoln and Cuba (59) mean that the steps of research process have to be identifiable by interested participants; the confirmability audit is a criterion of truth in qualitative research so the conclusions and interpretations emerge obviously from them. Objective understanding is only possible in the respect that it can be

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achieved on the basis of common characteristics, such as language and culture, so understanding is not possible independent of them. Objectivity in hermeneutic research can be understood by faithfully representing the texts and even being an ideal and cannot be reached fully because the person who reads shall interpret findings from their own horizons. In this thesis confirmability (objectivity) was attained by asking for explanations and elucidations and by discussing summaries with the participants. Inquiry audit trail involved examining the data and reconstruction of results to achieve confirmability (by co-operating with research team, interview transcripts, data reduction and analysis, process notes, personal notes on intentions and data reconstructions process).

According to the truthfulness of the analysis, research in the Gadamerian tradition can be different from other qualitative methods. If the person, who is reading, is familiar with the situation, he is able to understand the truth of that situation Gadamer (61) nevertheless, explained there is no statement that is generally correct, since no statement can avoid the complexities of interpretation. For Gadamer (31), understanding can only be reached by harmony of the whole and the parts of a text.

This presents a standard for trustworthiness related to the processes instead of simply to the conclusions of the research.

There is no single exact meaning or general application of findings, but the most probable meaning from a specific perspective. In qualitative research, trustworthiness of interpretations deals with establishing arguments for the most probable interpretations (61).

Ethical considerations

The study protocols (Dnr 01-124 and Dnr 01-124 Addition) of studies I, II, III and IV were approved by the Research Ethics Committee at the University of Linköping, Sweden, and of studies III and IV by the Research Ethics Committee at the Sahlgrenska Academy, University of Gothenburg, Sweden. Swedish (63- 65) and international guidelines for medical research (66) were underlined and that participation was voluntary, as well as the patients being able to withdraw, without any explanation, at any time they wished, without any negative consequences for their treatment. These guidelines served as a guide during the whole research process.

Ethical consequences of autonomy and risk of causing emotional harm through interviews were considered. The men were recruited to studies I, II and III during their medical visits. As soon as the urologist deemed it suitable, the men were given oral and written information about the research studies. They were briefed on their right to withdraw from the study at any time without any motivation. An informed, voluntary consent was an explicit agreement which was returned to the

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METHOD

researcher by the research participants. Before study IV, the researcher called the men to ask if and be sure that they were willing to participate in the interviews. At the same time, they were informed of their entitlement to refuse participation. The researcher tried to be as explicit as possible when making time limits for interviews and looking out for potential sidetracks according to researchers´

scientific responsibility, relations to the participants and independence.

Approach and process in research have to be fair and in accordance with the principle of justice (66, 67). In this thesis, the men had the right to fair and equitable treatment before, during and after their participation in the study as well as their right to privacy; to participate or not in the studies did not influence on the men´s care or treatment.

The probable risk of men´s involvement in the studies could have been of an emotional nature, as it could be stressful to discuss the circumstances of the disease. Ethical considerations were emphasized with regard to the interviews.

The principles of beneficence, non-malefience, doing good and doing no harm were effected (66). In interviewing adult men with a suspicion/diagnosis of prostate cancer and asking them to relate their experiences, it is possible that discomfort and anxiety can be aroused. They could be reminded of feelings and memories which were hurting at the time, but could, on the other hand have a beneficial influence on the person. Speaking about their feelings always involves a risk of crossing the border which the people regard as their personal sphere. The researcher paid attention to the men’s desires to finish the interviews, either owing to emotional worry or an expression that the interview was over. After the interview, the interviewer recapitulated the main points from the interview, so that the men could comment on this feedback. They received even the chance to deal with issues they had been thinking or worrying during the interview. After the interviews, the participants could phone the researcher who, in turn, could refer to the social officer or psychologist as support if needed. Treating the participants with respect, caution and sensitivity was a central approach for the researcher.

Qualitative researchers study small samples, and there is a need to be conscious of the necessity of shielding the identities of the participants. All data were coded to guarantee confidentiality. In order to achieve confidentiality, the patients’ real names were not used on the tapes and transcriptions but code numbers/letters or pseudonyms were assigned instead. The list of codes that applied to the true patient identities, i.e. the ‘key’, was stored separately. Data were continuously gathered on discs stored in locked files, to which only the researcher had access as a further method on ensuring confidentiality. The men could, without any motivation, ask to see the recorded data. This management of data was one way of not harming the participants’ integrity.

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FINDINGS

Summary of the four studies included in the thesis Study I; No Fatigue Related to Prostate Cancer

Examination: A Qualitative Study

Eleven men undergoing prostate cancer examination on the basis of a clinical suspicion of prostate cancer but who actually had benign disease, participated in the interviews. The findings were called Everyday fatigue, Personality and Anxiety, they were all involved and integrated with one another.

Everyday fatigue

Everyday fatigue is a part of normal life and was sometimes raised as a condition without any causes. In relation to aging and biological processes it was closely associated with frailty. Capacity was changed but was accepted or compensated for by persistence and cunningness. After effort, a sense of fatigue could occur as a nice, natural feeling for a moment. Other causes of fatigue were described as lack of sleep, mental and physical disturbances, such as after operations and medical treatments. Everyday fatigue is a natural temporary human reaction to make the person settle down.

Personality

The men who experienced fatigue, expressed disharmony, mental instability, emotional strain, less worth and uncertainty which were not associated with the examination for suspected prostate cancer. They had had, even earlier than the examination for the suspicion of prostate cancer, for example depression and expressed a kind of sensitiveness to fatigue, because of future uncertainty.

Anxiety

Anxiety contributed to and could cause fatigue. Fatigue was described as physical and mental resignation. Mental and physical fatigue goes together; the body is not able to manage the task, causing negative thoughts which lead consequently to apathy, and to mental resignation. The prostate cancer examination itself was not the reason for anxiety but the thoughts it made them conscious of were the real cause.

Around the time of prostate cancer examination and expecting the answer, the men did not feel fatigue because of the examination. All men expressed that they did experience normal every day fatigue. Personality, in the sense that those who were treated for some mental health problems, was a factor which influenced the men, causing fatigue. These men even expressed anxiety as contributing to fatigue.

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FINDINGS

Study II; Men’s perception of fatigue when newly diagnosed with localized prostate cancer

Sixteen men newly (within 2-4 weeks) diagnosed as having localized prostate cancer with PSA ”10 ng/ml and who were untreated at the time of the interview participated. Findings consist of five stages and were elaborated, in succession.

They are called Enclosing Intrapersonal Emotions, Enclosing Interpersonal Attachments, Re-opening Intrapersonal Emotions, Re-opening Interpersonal Attachments and Living with New Perspective.

Enclosing Intrapersonal Emotions

Enclosing Intrapersonal Emotions was a kind of vacuum. The men’s expectations regarding the diagnosis influenced their initial emotions. They experienced a sense of physical vulnerability and they felt uncertain knowing that they might have to confront possible tumor dissemination, loss of control. The first emotional reactions were similar to shock. Their feelings were, for example, anxiety; fear of maiming surgery, loneliness and restrictions to their manhood. The men appeared to be blocked and overwhelmed in emptiness created by them, without capacity for

”input”.

Enclosing Interpersonal Attachments

Even Enclosing Interpersonal Attachments was a kind of vacuum. On the one hand, the men wished to receive practical advice and tips, someone to talk to offering empathic backing. On the other hand, they had difficulties in being open and discussing their cancer perceptions. Their relationship with the physician could be valuable, similar to friendship, or abrupt but distinct. For a while they did not manage to tackle “input” or “output”. The men did not wish to hear pity, but the supportive persons around were valued for their positive thoughts and thus providing an atmosphere encouraging action.

Re-opening Intrapersonal Emotions

Re-opening Intrapersonal Emotions contributed to go-ahead spirit. After a mental block the men triggered off a rebellion allowing them to move forward. They had to accept a diagnosis of prostate cancer in spite of their disappointment. Adapting their emotional reactions, the men got the fighting spirit in order to live with dual perceptions, such as a sense of anxiety and hope; giving up and getting up in revolt;

vacillating fait; acceptance and denial; liveliness and reflection. This was a way to gain control over the situation contributing to optimism and hope.

Re-opening Interpersonal Attachments

Re-opening Interpersonal Attachments also triggered and contributed to go-ahead spirit. The men became again aware of those around and opened their minds to them. The people in their surroundings had their own processes of adapting to the

References

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